The knife you see - Ulcerative Colitis, Colectomy & Beyond

This blog is a documentary that describes my journey through the experience of a colectomy, recovery, and life afterwards. It is written for information and "inside story" of those that are in a similar predicament.

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Monday, 25 May 2015

I don't like to post unless I have something actually useful to say. I feel that I do have something to say that might be useful to anyone who has just had an ileostomy.

SUPPLIES:

In order to get supplies of baggage etc you need a supplier. They will get hold of the things that you need and deal with your prescription etc. The company I use is called Ostomart. I have found them really really helpful. They ring me every so often to check that I'm getting everything I need, they are human, polite and knowledgeble, and often at Christmas they include a box of shortcake with the supplies. A bit of an odd juxtaposition I suppose but I like that. They other day I got a small sweet for no apparent reason!

You can choose your supplier.

I reccmend them, and NO! they didn't pay me to say this. In fact they may not know I've written this.

PANTS:

Obviously one of the most difficult parts of your wardrobe is your pants. There's no getting round that. Now Ostomart (as above) do make some pants but they are not suitable for gentlemen unless you are a snooker player. The best solution I've found (and I admit it's a personal choice) is Comfizz who do some pretty good pants that hold both your bags in order!

No they didn't pay me to say this, in fact they might be surprised to find I reccomend them. But I do.

SWIMMING:

For me swimming was important. I wanted to get back to it as soon as I could because I like it, it's good for you, and I've met lots of interesting people whilst swimming.

I experimented with various different clothing solutions from high waisters, through bermuda shorts and eventually settling on a triathlon suit. This is THE answer to the sartorial problems of your swimming gear. They are sleek, they look better than speedos anyway, they render your bag almost completely invisible to all but the closest inspection.

They control your bag completely and you can in fact just forget about it. In looking for triathlon suits I've bought many from different places. The problem with them is that they are quite expensive compared to your average bathers. My reccomendation is an eBay shop called raptorsportsukNo, they didn't pay me, but they did replace a suit whose zip went wrong without quibble and fuss.

Wednesday, 16 January 2013

Something I have realised:
Ulcerative colitis; It’s in the past for me now.

Yet people I haven’t seen
for a long time will ask me “… and how’s your . . .” then mouth the word tummy.
I understand that people are genuinely concerned and wishing me well. But I
moved on a long time ago now. Sometimes I even wonder why they are asking such
an odd question. I can even admit to you, dear reader, that I find it slightly
irritating, despite the very good intentions behind the questions.

Gone are the days when I spent
hours worrying about my diet, or even whether I should eat at all. I no longer
worry about where the nearest lavatory is.

OK sometimes I’m a bit
self conscious of my physical form, but even that I can lve with. Before the
surgical removal of the colon and the creation of a stoma I thought it was
something I would never be able to live with. But I can, and it’s alright.

Diagnoses was frightening,
living with it was difficult, treatment was radical and full of fear, but even in
the depths I found there was something valuable to be learned there.

The causes of Ulcerative
Colitis seem to as mysterious as they where in 1997, and the experience, signs
and symptoms are still just the same. I’ve been disembowelled, and I have “moved
on”. It’s in the past; it’s total and complete.

Have I been defined by it?
Maybe a little too much, and it occurs to me that I am complicit in that by,
amongst other things, writing this blog.

I was lucky. I didn’t have
Cancer and this is not so bad by comparison. I feel that perhaps I have come to
the end of my commentary.

So until something that is relevant and worth
reporting comes along I wish you health and happiness and, finally, leave a
link to another blog that I hope you may find of interest: hypnottik.blogspot.co.uk

Wednesday, 19 September 2012

It’s my second meeting with Mr Fitch, the surgeon. We’re
waiting in Room 7 with the ominous sub-label “Demonstration”. A tissue covered
bed awaits the next person, and the noises of the corridor echo around.

Fitch enters; he’s a tall man with very short hair, glasses
and impossibly clean hands. The wrinkles around his right eye are slightly more
surprised than the left. I wonder if this is the eye that he uses to look down
microscopes. He shoots out a hand at me, and then sideways at Clare. I have my
questions spread out before me, a copy for all three of us so we can keep track
of the conversation.

My first heading on the list is “What are the
implications of doing nothing and continuing as I am?”

Before I even ask the question Fitch is off like a busy man
on a bicycle approaching the subject without reference to my sheet. He is
talking about the fact that I still need another operation anyway; whatever
happens. He’s predicting my questions very well. I wonder how many times he’s
had this conversation.

It seems that the tattered ribbon that remains of my gut
(rather horribly called the – I hate to even write it – the stump) has been
left in case I want to get reconnected. However if I don’t then that too must
be removed. So whatever I decide I still face one more sharp encounter. This
operation is because the stump itself may have the remnants of colitis and
could even later develop into some kind of worse disease. After that has been
removed there is no going back. It’s done and I would be a permanent ileostomy.
There is a slight risk here of accidentally damaging “the naughty nerves” in
which case you are limp and leaky. (Nice)

The next question is about time, do the prospects of
successful surgery change with age? Not
really it seems. He’s operated on 60 year olds who don’t like the stoma and
he’s had 17 year olds who say they’ve had enough and they don’t want more
operations.

Next I’m interested to define what is meant by failure. He says this whole question of success and
failure is quite interesting. In one sense failure is a j Pouch that has to be
aborted, and you have to return to ileostomy as a result. There are a number of
possible reasons failure he explains, grabbing my question paper, turning it
over and scribbling on the back. (See above) The two main causes of failure seem to be when
the join between the newly created pouch and your backside leak. Obviously this
is extremely bad news as your body cavity is now filling up with sludge. An
anastomatic leak. The other is where an infection works it’s way from the gut
outwards through your flesh to the surface – a fistula. Lovely.

It’s to prevent such nastiness that in the UK there are two
operations. The first forms the pouch, which is not used for a few months while
it completely heals up before it has to deal with any crap. Once it’s been
proved watertight by means of a liquid and an X-Ray, reconnection is made and
you are back to being a bum wiper. Often in the US he says it's done as one operation but there is a higher chance of a leak / infection that way.

Interestingly he also talks about how success is hard to
quantify as well. The fact that you have a functioning leakproof pouch does not,
in his opinion, equal success. “I want people to be happy!” he says "Despite continence you may well be
going to the loo up to 8 times a day, and you may be unhappy with the quality
of your life."

“The thing about you guys” he says “is that you’ve forgotten
where you were. Your quality of life was terrible and frankly you were dying.
An ileostomy isn’t natural – it takes some management and your skin can be itch
and uncomfortable but . . . compared to where you were. The ileostomy is an
amazing operation and it’s been around for a long time.” In fact this kind of surgery
has been around since the 1780’s or thereabouts.

“The 85-90% success rate has to be taken on board very
carefully” he says. "If you are one of the 10% of failures, then that’s 100% failure
for you. You know it’s OK most of the time to cross the road anywhere, but if
you knew you were going to be hit you’d use the bridge 100% of the time”.

That’s true isn’t it.

Post Op monitoring and care is minimal he says. “Once you’ve
got that far and I’ve monitored you for a year that’s it. You’ve been prodded
enough by then.”

One other thing that might interest you: If you have lost
your colon you are more likely to suffer from iron deficiency, b12 deficiency,
and get arthritis. There’s also an increased risk of kidney stones of a type
that don’t easily show up.

“You have to really really want to have a J pouch. If you are managing OK with your stoma then I would
urge caution”

So there we are.

I’d be very interested to hear your views. Would you or
wouldn’t you? If you have I like to know about your experiences.

Friday, 27 July 2012

I had a conversation the other day with someone who didn’t
know the difference between the commonly understood colostomy and the less well
known ileostomy. Why should you know unless the red hand of fate intervenes in
your life and hits you with something like colitis or Crohn’s?

I’d never heard of it before it came my way.

So here’s a quick run down of the guttering. . . . (Click on the image below to enlarge)

Gut Map - Roger Knott-Fayle

Mouth: Where you put it all in

Esophogus: Pipe down to the stomach

Stomach: Cement mixer and vat that breaks down the food

Pyloric sphincter: Stops food that has not been properly
processed by the stomach from moving on. When it’s “done” it’s called “Chyme”
and this is allowed through the spincter to be further processed in the . . .

Small intestine

Duodenum which further digests food and extracts nutrients.
The duodenum is the first part of the small intestine.

The jejunum – part two of the small intestine – absorbs
carbs and proteins.

The Ileum – the last part of the small intestine where fats
are absorbed into the blood stream

The small intestine finishes with a valve called the
ileocecal valve. This stops anything coming back up from the large intestine.

The large intestine – the colon- is about 5 foot long and
starts with the cecum which is a large pouch which receives the gunge that
emerges from the small intestine.

The colon has four parts the ascending colon, the
transverse colon, the descending colon and the sigmoid colon this 5ft of gut is mainly concerned with
absorbing any water back into the body, and acting as a packing and warehousing
unit before expulsion at your soonest convenience.

It is this last 5ft where your ulcerative colitis lurks.

So depending on the severity you might face either an
ilesotomy, or colostomy.

If, like me, your last 5ft is so completely kaput, the whole
5ft comes out and the hole – or “stoma”(Latin for opening I think)- is formed at the end of your ileum.
Ileum stoma which contracted down becomes ileostomy. This is where everything exits
me.

If your last 5ft is not so completely kaput, for example if
the colitis is only in the sigmoid section of the colon, you get to keep the
rest. In this case the hole is made on the colon; colon stoma shortened to
colostomy.

In the case of Chron's I believe, please correct me if I'm wrong, the problem can occur anywhere along the small intestine or the long intestine. In the case of ulcerative colitis it occurs only in the colon.

Monday, 16 July 2012

In the words of Talking Heads "When I have nothing to say my lips are sealed"

Well, still nothing new here really except to say that watched this programme on BBC the other day. Much of it will be nothing new to a seasoned UC sufferer. However there is an interesting aspect of the gut which is that it shares some similarity with your brain.